ANDREWRetrun to 22q Stories
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My son, ANDREW, was born June 2,1987, in Dallas, Texas. The pregnancy was normal and induced on the 2nd. Doctors detected a murmur at birth, and Andrew was whisked off to NICU. He was found to have a VSD and sent home to “watch” him on medications. Feeding time took forever due to his slow ability to suck and then regurgitate everything he had just gotten down. At nine days old, he had a seizure and we rushed him to the ER. After a heart catheterization, doctors then discovered he had Truncus Arteriosus, due to DiGeorge Syndrome. We were sent to San Francisco for surgical repair of the truncus. We returned to Dallas on heart meds, calcium supplements, Vit. D and diuretics. Andrew had ear tubes inserted at two and started the Early Childhoood Developement support program, including speech therapy, at three. At 4 years old, he was diagnosed with VCFS and underwent a pharyngeal flap procedure. He underwent a second heart surgery in Dallas to replace his homograft at 5 and 1/2 yrs. He continued to need educational support throughout his school years, and battled the occasional “bully”, but eventually found his core of good friends, who continued to love and support him throughout his short life. In 2000, he had surgery on his jaw to pull the recessed chin out a bit which was successful but he continued to be a “mouth breather”. In 2009, he had to have his aortic valve (quad-cusped) replaced, did well and was discharged in 5 days. We were told this should last him 30+ years. Then in March, 2012, he became ill, and it was discovered he had peri-valvular leakage of his aortic valve. Surgery was done to replace the valve and “clean” the surrounding tissue. It was successful, but took a huge toll physically on him. He was in the hospital for 6 weeks, including a week of rehab. Came home and started to slowly continue down the recovery road, going out and having fun with his friends. On July 1, he began feeling ill, was hospitalized again and discovered he was septic from MRSA in his bloodstream. He was unable to fight it and very sadly, died from complications on July 6, 2012. He truly was the sweetest, most loving person, who saw only good in everyone. I miss him everyday but I am so thankful for the best 25 years I had with him!